For those of you who live with an ostomy, you know how awful it is when your appliance leaks.

The degree of terribleness, in my opinion, is dependent on:

Where I am when it happens

How much has leaked and whether it will require a lot of cleaning up after the appliance change

Whether stool got all over my clothes (beyond undergarments)

If I need to take a shower because of the leak

If I can get back to what I was doing prior without the whole mess putting a damper on it (two separate examples include: getting back to sleep OR back to a social event)

So, as someone who has lived with two ileostomies, my current one for nearly six years now, I keep wondering:

Does it ever get easier?

I have thought about this a great deal as I have had a lot of problems with skin irritation which in turn, causes my appliance to leak a good amount. I guess if I had to answer my own question, my response would be:

No, it never gets easier but you get smarter about it and are able to adapt quicker.

I don’t want to give you the whole “there is no substitute for experience” spiel so I want to acknowledge it (which I just did 🙂 ) and move on to share some thoughts I have picked up over the years.

1. Always have an extra appliance with you.

No excuses. For women, it fits nicely in a small makeup case in your purse. No one has to know. For men, I recommend keeping one in your car and also, in the inside of your coat pocket (if possible). I have heard some men tuck it into their sock, although I am not sure how comfortable that would be.

2. Be mindful of where you are in your changing cycle.

Meaning, did you just change your appliance the day before and it is feeling secure or has it been a while and you can tell the seal isn’t as tight as it should be? Sometimes people leave the appliance on even when it seems to be time to change it for whatever reason and feel it is good enough given the situation the person is in (trust me, I have done that many times so no judgement!). If you are going to be out and about or honestly anywhere but home, it might be wise to change the appliance just to be on the safe side. Peace of mind can change your entire outlook on the events planned for the day.

3. It’s okay to get upset

Understand and do your best to accept the fact that IT IS OKAY TO GET UPSET ABOUT YOUR OSTOMY LEAKING! Think about it for a second. You have a piece of your intestine out of your abdomen and are forced to wear an appliance on your skin 24/7 (for an ileostomy) while stool goes into a bag that hangs off your stomach. Add to that, stool just leaked all over you while you are going about your life, trying to live it, not hurting anyone. Who would NOT be upset by this scenario??? Answer: No one who is currently breathing.

While it is perfectly natural to get upset about an ostomy leak, it is also equally important to be able to calm yourself enough to put things in perspective. For example, saying to yourself that you do have an ostomy (which has likely saved or greatly improved your life) and given you have no choice but to accept this right now, know that leaks are a very “normal” thing to happen to someone. Unless the reason is a bad skin condition, you don’t have to go to the hospital or make a doctor’s appointment. There is no racing to the emergency room which as most of us know, is a petrifying experience for most people with IBD. Remind yourself this comes with the territory and while it SUCKS, you will deal with it, get through it and move on. All will be okay.

4. Out of sight, out of mind

The faster you deal with it, the faster you can get back to feeling like a human being again. I know a lot of this depends on where you are when the leak occurred. When you are home, I recommend thinking about some variation of the following. Not so shockingly, when a person is covered in stool, we don’t quite feel our best. We feel dirty, to say the least. Many ostomy leaks cause us to feel this way which is why I try not to think about the fact that it leaked until everything is all cleaned up.

If I need to take the sheets off the bed, I do so quickly and just put some blankets down to lay on afterwards. I take my clothes and everything else that was impacted in the washing machine so it is out of my site. All towels also go right in the machine; not in the hamper where I am reminded of the incident. If the leak is so bad that I need to shower, I do that as quickly as possible while still trying not to think about what is happening. I do my best to look at it as one less shower I have to worry about. I place the old bag in one of those odor-free garbage bags most of us get with our appliances and bring it into the kitchen garbage (if I don’t take it outside immediately). Once I am all cleaned up, I can then deal with the emotions that the leak may have stirred up.

If you are out, I recommend doing whatever you can to bandaid the situation until you can get to a place that is easier for you. By bandaging, I mean changing the leaky appliance by making sure your stomach is as clean as it can be and applying a fresh appliance over it. In terms of clothing, it is never a bad idea to keep an extra pair of pants, underwear and shirt in your car just in case.

The bottom line…

Those of us who suffer from a form of inflammatory bowel disease (IBD) are some of the strongest people I know. We are resilient. We adapt and adjust to things most people can’t fathom. And we are always focused on trying to live our lives the best way we can. While ostomy leaks will happen from time to time if you live with any kind of ostomy (ileostomy, colostomy or urostomy), we begrudgingly accept that is is a part of who we are with time.

Everyone has challenges and this is just one of ours. The acceptance doesn’t happen overnight in the least bit so never feel down on yourself if you are at a point where you just despise your ostomy. I get it and have been there. It can take years and years for many. The acceptance also never means we are happy about it, or even okay with it. It is always awful. But we learn to get through it. We are a tough bunch!

Do you have any thoughts or tips on ostomy leaks? Do you get a lot of them? If so, have you found anything to be helpful? Do you rarely get leaks? If so, we would love to hear about that also!